Like many chronically ill people suffering with autoimmune disease, my Crohn’s disease has not responded to conventional treatments which have only provided very temporary and very inadequate relief (if any at all) and which cause crippling side effects of their own which often require even more treatment which causes even more side effects and so on. This grueling and gruesome cascade of interventions for Crohn’s patients relying on Western medicine for relief or for a cure, when Crohn’s is known to be incurable, progressive and unresponsive to conventional therapies is likely to go on and on for infinity or until you die, or until you give up and try something completely different. The first alternative therapy I tried for Crohn’s was the so-called elemental diet which in the United States is marketed as Vivonex, an enteral feed meant to be given through a feeding tube directly into the stomach. It was never meant to be drunk straight but you can take it that way if you are able to and if you can keep it down and getting or keeping it down is not an easy task. Vivonex is a powder that you mix with water to create a sickly looking yellow fluid that tastes like a restaurant walk-in cooler smells — damp, food-like and disgusting.
Whether taken through a feeding tube or drunk straight, the elemental diet offers bowel rest in which you are getting nutrients with no bulk and therefore without anything to “digest” leaving ulcerated, inflamed and otherwise injured and impotent bowel tissue to rest and hopefully to heal. The nutrients are not digested in the intestines and instead are processed directly through the liver. In my own case, the elemental diet didn’t work at all. As soon as the fluid hit my gut it responded as it did to all food which was to essentially reject it as a malignant intruder and cause an immediate fever to try to kill it among other things. I felt nauseated, feverish, spasmodic, bloated and every other sickening facet of Crohn’s no matter what I ate, even if it didn’t need chewing — in my case at least it seemed as if the “bulk” meaning fiber and whatnot of normal food wasn’t my problem. In Japan, they have a similar enteral treatment marketed under a different brand but is the same thing and the same idea. The medical literature seems to suggest that this treatment is somewhat successful to induce “remission” in Crohn’s patients in Japan but is it really? And what does that even mean? Reading between the lines of this journal article, along with personal experience and a bit of inside information have led me to believe that not only is the elemental diet not effective here or in Japan or anywhere, but also that the medical literature is intentionally obfuscating and ultimately misleading on the efficacy of enteral feeds for Crohn’s treatment, the health and wellbeing of Crohn’s patients generally including what clinical “remission” means and what it doesn’t, and where Crohn’s sufferers often end up with their treatments and with their lives.
In the abstract of the medical journal linked above, we see that “Japanese guidelines for the treatment of CD (Crohn’s disease) recommended nutritional therapy as a first-line therapy and as a maintenance therapy after inducing remission.” In this case, so-called “nutritional therapy” refers to enteral feeds taken either through a feeding tube or drunk straight, and from what I can tell this means that once you have Crohn’s disease you will never be able to eat or process actual real food ever again. Isn’t that exactly what this medical Newspeak gobbledeygook is saying? What else could it mean? You take enteral feeds initially to get into “remission” and continue taking it even afterwards, presumably forever as a “maintenance” treatment. That means that if you ever go back to eating actual real food, your “remission” will be lost and you will once again be sick as hell and back to where you started: needing enteral feeds forever and never eating again. This is the conclusion of medical research on Vivonex too — it might help in the beginning if used exclusively in place of food but as soon as you start trying to eat normally again you immediately relapse. Attention Crohn’s sufferers: they know we have a disease due to which we can no longer process food. If there is any medical condition or anything that is less compatible with life, I can’t immediately think of it.
Next we see this: “This treatment policy (of treating with enteral feeds forever and giving up food entirely) has led to Japanese CD patients having lower mortality rates than that of patients who do not receive [it].” Mortality you say? Mortality, not morbidity, where mortality means you die, and morbidity means you’re sick. But allegedly, Crohn’s as a so-called chronic illness isn’t supposed to be fatal. So is Crohn’s disease fatal? If Crohn’s disease were acknowledged to be fatal what would happen to the policy and practice of “treating” Crohn’s patients with gruesome and ineffective conventional treatments forever? What would disability and other benefits for Crohn’s sufferers look like if it was acknowledged that we suffer not from a confounding and hard to treat chronic illness but from a terminal illness and an excruciatingly painful one at that? How would Crohn’s sufferers be dealt with when seeking euthanasia if their disease were on the list of known terminal illnesses instead of pretending that it’s desirable or even possible to live with Crohn’s disease long-term?
Or, are they admitting that conventional treatments for Crohn’s cause escalating side effects and trigger the dreaded “cascade of interventions” and the treatment itself is what leads to our demise? Being that the anti-inflamatories and steroids are completely toxic, that the immunosuppressants cause opportunistic infections and cancer, and the surgeries are risky and cause intestinal adhesions necessitating more surgeries and so on, this could easily be the case. It could also be both of the above, where the true nature of Crohn’s as a terminal disease in itself is masked by obvious treatment-related deaths such as when death occurs due to medical mistakes, complications from surgery, or even death from immunosuppressant-caused cancer and toxic cancer treatments down the line.
Or, being that we are talking about Crohn’s treatment in Japan, where suicide is basically accepted, expected and tolerated if not particularly encouraged, are they admitting that Crohn’s sufferers who continue to eat food — which is almost all of them because it’s food and we have to eat/we really aren’t being told not to eat or provided with any actual reasons or evidence of why we shouldn’t/Vivonex costs about $1000 a month not counting costs for administering it via feeding tube — end up killing themselves in statistically significant numbers and that this outcome is somewhat mitigated for Crohn’s patients who stop eating food entirely forever? Interestingly, I have a bit of “inside information” from a local living in Japan that there are automatic disability benefits available to Japanese residents with a Crohn’s diagnosis. That tells me that the “elemental diet” doesn’t work in Japan any better than it worked for me. If the Japanese enteral feed worked, or worked for long, Japanese Crohn’s patients would get better and wouldn’t need benefits at all.
Furthermore, Western medical journals admit that suicidal ideation and completed suicides, depression, drug and alcohol dependence and so-called “psycho-social complications” are a facet of Crohn’s disease that needs addressing and is not in fact being adequately addressed. Now why might that be? In order to address the issue we first need to get honest and get real about what it is we are dealing with. Why do Crohn’s patients die, what do they die from, and why do they want to and succeed in killing themselves so frequently? These are the questions that need asking and answering if the “psycho-social” facet is to be honestly and effectively addressed but it never is.
But putting 2 and 2 together here, I am starting to see the big picture and it more or less correlates with my own experience: Crohn’s disease means that you can no longer process food and it’s progressive which means you can’t eat now and never will again; Crohn’s disease itself is likely to be fatal and as it’s incompatible with eating it is therefore incompatible with life so that makes sense; Crohn’s disease even when “treated” conventionally leaves patients wanting and needing to self-medicate with street drugs and alcohol and desperate for any relief from their suffering even if they can only find meaningful relief in death; and they get depressed about their situation because it’s completely and reasonably depressing. And similarly to the case of treatment-related deaths potentially masking the terminal nature of the disease itself, Crohn’s patients who meet their ends by suicide may have died anyway from the Crohn’s itself if Crohn’s is indeed fatal. Suicide related deaths could be masking the terminal nature of the disease which may have killed them anyway if they hadn’t killed themselves first.
Is this what is going on here? Are we being lied to about Crohn’s being an incurable progressive disease when it’s really a terminal illness? Because it sure as hell looks, acts and feels like one to me. And being gaslit about the true nature of our condition including our often terminal prognosis whatever the cause is only more abuse and therefore doesn’t help and probably makes things worse as abuse always does. If we were being lied to and distracted from these truths about our condition, about where we are likely to end up and how we are likely to get there I can’t imagine that things would look any differently than they actually look now: Crohn’s patients dying, being forced and coerced into making as much money for the capitalistic patriarchal medical machine for as long as possible, and kept constantly “busy” and chasing our tails and chasing relief without the time, energy or heath to seriously research our condition and then try to get past the deliberate half-truths and obfuscations to see what that research really means.
In my estimation judging by the research and my own experience as a Crohn’s patient, Crohn’s disease is looking like it’s fatal y’all. This is my working theory and I have every reason in the world to believe it. As one Crohn’s patient bravely admitted on an online Crohn’s forum: even when she manages to achieve so-called “clinical remission” she still feels like walking death all the time and never really feels “better” no matter what she does and what the tests say. Others agree with her assessment and so do I. In my own case where I have decided not to subject myself to any further painful invasive tests when I already know I have a permanent condition that doesn’t go away, I can pretty much tell when I am having a clinical “flare” where I go from my new normal of “still pretty bad” to “way way worse.” If we are honest, we know that it’s not exclusively or even largely the findings on objective tests that are causing our symptoms and making us sick and we don’t know what is. If anyone knows, they aren’t telling the patients.
I would like to add that I have found tremendous relief and some amount of healing from the protocol I have created including organic and fermented organic foods, top-quality organic or non-GMO supplements, and medical cannabis. I am even relatively happy where I am now working on my small business in a beautiful rural setting with my 2 adopted cats and some cow-sounds, cow-smells (and cows!) right nearby. I think I could do this into the foreseeable future and possibly even manage my condition long-term in this way if I were only financially able to sustain it. But everything, and I mean everything is conspiring against me and against that favorable outcome at the moment. In fact, I had to give up the supplements months ago and can no longer financially maintain my organic and fermented foods diet and after about 2 years of finding relative relief, my symptoms are again getting progressively worse. The true insanity of this illness and of my station as a Crohn’s patient seems to suggest that we are not being given the whole truth about any of it since the truth makes sense, some kind of sense, and this makes none. A so-called chronic illness that permanently prevents people from eating or assimilating food, that’s intractably painful, medically untreatable and predictably fatal? Please. If that’s not the very definition of a terminal illness then I don’t know what is. Assuming that I and any Crohn’s patient is too stupid to figure any of this out is insulting and perhaps the shit icing on this shit Crohn’s cake.